1. join PAN
the lobbying organizations are in place, they just need more support
2. urge BOB HOSKINS to be more like MJF who has done more to help pd'ers and might be giving us our first pd sitcom which will be incredible.
3. support the MJFF, they seem to be influencing both business and govts more than any other organization.
4. participate in a clinical trial even if it's just data collection. even if we had a better way of doing research and more money, it ain't going to matter if it takes a year or more to find enough volunteers for a trial. i know i'd personally have a tough choice volunteering for brain surgery with a 50 /50 chance of getting a sham treatment so maybe volunteers need to be paid more. i was in a clinical trial that interfered with my job and took hrs of just waiting around for the neuro to fit me into his schedule. it was with a major drug company. it cost me way more than they paid me, with the carrot being i would get the new drug for free if approved, which it wasn't.
no need to reinvent the wheel imho.
i see more trials that might have disease modifying outcomes than ever before. i was very surprised they were initiating foetal cell implants again in europe, when done in the 80's/90's it worked great in some patient, in others it didn't. a company in NZ is starting a trial implanting pig cells. i'm more under the impression that a "cure" is possible and it may result as much from basic science and genomics than from research targeted directly at pd.
that said, with pd now being seen as much more than affecting motor symptoms, i'm realistic that the "cure" will never make me 100% and it would be unfair to expect society to spend the money needed to develop research attempting to repair the whole bran.